Sunday, August 31, 2014

Only Four days out from a mind boggling surgery and Forrest is already coming back strong! Your prayers, visits, blog comments, messages, and love are all having their powerful effect.

We were blessed with Austin's special energy over the weekend. And visits from Austin's friends, the Lees, and Tom Kim & Kyle from A aplace To Be added their magic to his recovery. Instead of tiring he just got brighter throughout the day!

He may be swollen and sore but his spirit still shines through. Tonight Tami & Angel have his back and though there are still many hurdles ahead, truly... anything is possible.

Saturday, August 30, 2014

Today was my first day back with Forrest in a couple of weeks, and as always, it was inspiring. Forrest is hanging in there. He gave his first smile in several days this morning! Several friends visited throughout the day and elicited more ear-to-ear grins. He even threw a soft football back and forth a few times. He's uttered a few soft phrases that have been hard to understand. We've worked on range-of-motion exercises in-between doctor's visits. He's still on smoothie diet via PEG, but hopefully we'll evaluate his swallowing tomorrow and see about starting eating. There's still a significant amount of swelling, though we expect it to start decreasing in the next few days. Vitals are stable, no evidence so far of infection or other complications. The number of incisions involved in the last surgery is astounding; he's been through a lot over the last few days but he's in amazingly good spirits, all considering.

This evening Angel brought a few movie choices and Forrest chose Hercules, the animated Disney movie. We're bedside watching the movie right now with him. A few minutes ago the "I can go the distance" song came on, which Forrest has sung many times with Tom and in front of audiences, and Forrest mouthed the words along with us, too quiet to hear but nevertheless there. Tami just walked in the door and will be staying with him tonight. Tomorrow more visitors are arriving and we'll work some lacrosse into the physical therapy mix! Thanks for all the messages, he smiles when we read them aloud.

Friday, August 29, 2014

Hi friends, this is Toliver. My special person, Forrest, just got out of ICU! We moved to a new room in Intermediate Care (IMC) and he is resting right now. The doctors seem pleased with Forrest's progress but have told us that he has to stay pretty still, so I haven't gotten to play with him yet. I over heard Mum and Tami say that I look sad and worried, and I am! It is hard to see my person in bed with all the tubes and things I don't understand. So I do my best to cheer him up by looking adorable and making all the nurses and doctors smile when they come in our room. This afternoon I very faintly heard Forrest whisper my name, Toliver, so I think I must be doing a pretty good job.

I do want to share something with you. Canine Companions for Independence (CCI), the organization that brought Forrest to me, and me to him, needs signatures on a really important pledge! This pledge is to try to keep people from making their personal pet dogs fake service dogs. Here is a quote from the CEO of CCI about this issue:

"This pledge will help shine a light on all the people who outfit their untrained family pets to look like service dogs so they can enter places they don't belong. It will also highlight the discrimination that people with disabilities are facing with the real service dogs they depend on every day."

We need you to help CCI get 50,000 pledges by midnight on Sunday. This is really important to me so that I and my other service dog friends can keep doing what we love, taking care of our special people! Here is the link to the pledge: CCI PLEDGE

Thank you all for helping me take care of Forrest and for lending your voice to help CCI continue their amazing work.
Love, Toliver

Thursday, August 28, 2014

After ICU, Neurosurgery, and Plastics rounds, we have time now for a brief update, especially to thank all of Forrest's followers for your support, prayers, messages, and blog comments of love and encouragement.

Considering Forrest was in the OR yesterday for almost 15 hours and underwent 12 hours of surgery, he is doing remarkably well. The surgeons are quite pleased with the outcome. This morning one of the surgical fellows who assisted Dr. Kumar described the procedure as an "elegant" piece of reconstructive surgery!

It's difficult to get any rest in ICU, but Forrest made it through the night under the watchful eye of Johns Hopkins' finest nurses and his own personal guardian angel, Nurse Dawn. His breathing tube came out at 4 AM and his stats are all looking good. The vessels supplying circulation to the full flap graft are being monitored hourly with Doppler and the perfusion at the critical 12 hour milestone is good. There's quite a bit of the swelling as would be expected, but Forrest is able to open his eyes partially and acknowledge us.

He has given his doctors a semblance of his characteristic thumbs up. We are back to using one finger for yes and two fingers for no for now, which is fine. We doubt that he has anything positive to say just yet, but we are all eagerly awaiting his first words!

Toliver is clearly telling us how thrilled he is to see Forrest, exuberantly wagging his whole rear end while he gently places his head on Forrest's hospital bed and looks up at him with adoring eyes.

For now the main objective is for Forrest to rest, give the flap time to settle into it's new home, and the swelling to subside.

We will remain at his bedside watching the monitors and reading him your comments and messages. Many thanks for your love, faith, and support.

Wednesday, August 27, 2014

We just spoke to Forrest's surgeon Who is very pleased with the outcome. He had to deal with several complications primarily related to excessive scar tissue from previous surgeries. He says if the flap looks good this time tomorrow night he will be a happy man and the next 4 -5 days will be the most critical.

Forrest was carried through the long day by your collective prayer, positive energy, and faith. He is breathing on his own but is still intubated and will be transferred to ICU shortly. Even Toliver is vid ably relieved. We will see Forrest soon and tell him of the love and fellowship that surrounds him. Then we will stumble back to our rooms and the dinner Tami is keeping warm for us. His faithful nurse Dawn will be by his side through out the night to reassure him should he waken.

Praying now that Forrest rests well and dreams of Sandy beaches, ocean breezes and good times ahead with family and friends.

We knew this was going to be a long day and are grateful for all the prayers, good wishes, and positive energy flowing to Forrest and his surgical team.

Forrest has been in the OR for 10 1/2 hours now and the nurse just told us to expect two more hours. Toliver has made the waiting more tolerable, adding his special charm to the waiting area and shaking paws with small children. Clearly though he misses his Forrest as do we,

Forrest was in fine form this morning joking with his nurses and doctors, he had everyone in preop in "stitches". Toliver was at his bedside with his adoring eyes. When it was time to start, I accompanied Forrest into OR and held his hand. We spoke about the good times ahead, his upcoming musical, trips to Hawaii, his father's famous steak. We requested reggae and Forrest drifted off to Bob Marley singing One Love.

As Rev. Banse promised Forrest, last Sunday, God is with Forrest today, before him, behind him, and all around him. The circle of prayer taking place at Trinity Church this morning, as Forrest's surgery began, gives us all confidence and faith that Forrest's future is in good hands.

Prayers of thanksgiving for the love, faith and support of our family and friends and for the expert care and tender touch of Johns Hopkins doctors and nurses.

Sunday, August 24, 2014

We are counting our blessings every day. Today we focused on our blessings of faith, family, and friends. We spent the morning at Trinity Episcopal Church in Upperville, where Forrest and Toliver were warmly greeted by old friends and new. It is such a lovely place filled with love, faith, and peace.

After the service we were able to visit the outdoor chapel in the sanctuary behind the main church. It's a beautiful and peaceful space filled with wildflowers, trees, and pastoral views of our Virginia countryside. Our dear friend Shannon has organized a prayer service for Forrest there on Wednesday and we wanted to stand with Forrest in this hallowed space.

Here are the details for Forrest's brief informal prayer service:

Trinity Episcopal Church, Upperville

Wednesday, August 27 at 9 AM

Officiated by by Rev. Rob Banse

Meet in Trinity Church courtyard at 9AM

The outdoor chapel is a lovely five minute walk from the church (Van available for folks who desire to ride)

Polite pooches on a leash are welcome

Thank you for coming if you can. If you can't be there, thank you for joining in spirit and prayer.

This precious Sunday was made even more magical by time spent outdoors at brunch with the Lees. Forrest's lifelong friend, Madison, and her sister Megan always bring us love, laughter and joyful memories.

Giving thanks today for faith, family, friends, and a wonderful Sunday at home. Only thing missing was Austin!

Wednesday, August 20, 2014

Dear family, friends and incredible support team,It's been a wonderful summer. Knowing Forrest has the first of several major surgeries scheduled August 27 at Johns Hopkins, we crammed as much quality time as we could into the past few months. Family trips to Bermuda and the Outer Banks reaffirmed our belief that, as Forrest says, "Anything is possible!"Forrest's friends infused his summer with their love, enthusiastic activities, and invigorating positive energy! In addition to activities and fun, friends Gio and Nick (and Bro Austin) helped keep Forrest safe during the night through overnight shifts in the ManCave.Working with Kay and Del, Forrest gained muscle mass, balance, and endurance. Under Tami's guidance and tutoring, Forrest's speech and cognitive abilities continue to expand.With Pop's terrific cooking, he gained 16 pounds this summer and hit his pre-surgery goal of 165 this week! And through music therapy with Tom and fabulous camp activities at A Place to Be, Forrest's voice, character, and confidence have all soared to new heights.As his surgeon at Johns Hopkins, Dr. Kumar, exclaimed at Forrest's recent pre-op examination, "Forrest you look great. You have come so far and have optimized your condition for surgery!"That was the plan. Forrest is strong. He is ready. So next Tuesday we travel to Johns Hopkins and on Wednesday, Forrest will undergo a groundbreaking 10 hour surgical procedure. The surgery involves the transfer of a full muscle flap from Forrest's back to his "noggin" (as he calls it). This new tissue will provide some protection for his brain and vital circulation to support his beleaguered scalp. We are anticipating a 7 to 10 day hospital stay, if there are no complications, and a 10 to 12 week recovery period. Additional surgeries are anticipated 6 to 12 months later to harvest healthy bone from the back of his skull and implant it within the new muscle flap. This will finally createa safe environment for his brain and a complete skull, without using any foreign prosthetics.We are eternally grateful for the family, friends, and support team that have given Forrest such a terrific summer and such a strong start to the next chapter of his recovery. We will update the blog next week from Johns Hopkins to keep you posted on the Comeback Kid's progress.Love,Mum & Team Forrest

Monday, August 11, 2014

I wrote a musical with Mr. Sweitzer called "44" to share my story....from swimming with dolphins to adventures with Austin to the challenges I have faced since I hurt my noggin. The show was written for a cast of nine people to help be my "voice". The skilled cast members - Kyle, Lauren, Megan, Brendan, Crystal, Cameron, Amy and Nathan have been fun to work with and get to know. At our most recent rehearsal, we had not seen each other for at least a month. We were so crazy and loud Mr. Sweitzer said it was like a big family reunion. In October, we will be performing "44" as part of "The Same Sky Project" for thousands of school students, to share our message of acceptance, hope and living a big life, despite challenges. Yesterday we performed a staged reading of my show and there are some pictures below. Here's the last part of the script.I hope you like it and will come see our show in the fall.

So, I want to tell you all if you ever snowboard or do anything that could be dangerous,

listen to what they say and be prepared. Wear your helmet!But even more importantly, never take anything for granted.Walking, talking, eating, hanging out with your friendsYour life can change in an instantAnd whatever you do, tell your family and friends you love them!On the morning I left to snowboard, on my way out the door, my mom said

"Have fun Forrest! I love you!" And I gave her a big hug.She has never forgotten to tell me she loves me and I know that is the

biggest reason I am here in front of you today.Not everyone has a TEAM 44 beside them, and I am aware of thatBut what you do have is your family, friends, teachers and mentors who you can reach out toSince my accident, I have ridden a horsePlayed lacrosseSwamStarred in my own showSpent time with my friendsGraduated from High SchoolMarched in a parade with ToliverRaised money for organizations like "A Place to Be"If I have learned anything, I have learned that if you are a kind person and show others love,

when you are in need, those people will be right beside you to cheer you on.

Thank you all for cheering me on and thanks to the awesome 44 cast for helping me tell my story!

Sunday, August 3, 2014

Today the article about your journey came out in the Metro Section of Washington Post. We hope that it creates greater awareness about the life changing power of Music Therapy and provides hope and encouragement to others struggling to recover from Traumatic Brain Injuries.

You are spending your summer getting stronger in every way; physically, emotionally, spiritually. Your humor and wit are keeping pace! As your friends and family challenge you to reach a little further and dig a little deeper, we find more often than not we are struggling to keep up with you!

A week in Emerald Isle, NC allowed us to spend time with Austin and visit him at Duke's Marine Lab in Beaufort. You created new football passes on the beach with pals Tori and Nick and practiced yoga moves and guitar in the evenings. You even out "chilled" Cousin Susan in a very competitive beach lounging contest!

Its good to be back at BrightWood now, with just 3 1/2 weeks until your next surgery, we will relish every moment together, inspired by your determination and optimism. Onward and Upward, Champ!

With Love and Gratitude to your amazing brother, father, friends, extended family, mentors, teachers, doctors, nurses, and many followers who believe in you and sustain us all.